ME/CFS is a real illness

[garlicbutter]

Oh, I just need to sound off after things getting a bit heated on another thread.

Fibromyalgia included also. I don't get huge amounts of pain, but do spend huge amounts of time resting so that probably helps.

I'm pissed off that my occupational therapy turned out to be "Learning How To Be Ill" and that I'm going to have to appeal (again) against my DLA refusal.

I'm pissed off that I spend so much time on Mumsnet because I can put it down every 20 minutes and change my activity/position. Also that it's practically my only contact with the outside world.

I'm just generally pissed off

Fellow knackered whingers, feel free to rant!

I'll be back in 20 minutes.

[Thingiebob]

I have Sarcoidosis which is an autoimmune system disease that I suppose is similar to lupus.

Sometimes I get really down when I wake up in the morning and all my joints and chest ache and I want to roll over and go back to sleep but I can't as I have responsibilities and a small child to look after.

I too am sick of having to cancel activities because I feel too ropey to do them and the subsequent look of dismay, annoyance and disbelief on friends faces.

I've lost quite a few friends because I have weeks at a time when I feel really unwell and reduce activities. A friend of mine told me she thought I was just lazy all the time which hurt so much. I'm sick of being on steroids and other drugs which have resulted in me putting on loads of weight and a swollen face and the comments I get. Well-meaning friends telling me 'why don't you go to the gym?' and the general abuse and ill treatment from people who assume I look this way because I eat too much.

[Cherriesarelovely]

I really feel for you. I have known several people with the illnesses you mention and they have been so poorly and are VERY brave. I cannot imagine how horrible it must be to have something as debilitating as this for a long time. I offer you a huge hug and I really hope that things improve for you soon.

[totallypearshaped]

I still get puzzled judgypants looks that I'm a lazy so and so as I was out of the workforce for 8 years with ME, and don't have the lifestyle / possessions of someone my age. I had glandular fever that I never recovered from. I was ill from years 22 till 30. I lost a lot of friends, but made others and I find I'm a lovely person now! I understand life better.

But, OMG ME deniers make my blood boil.

The thing is I can see where they are coming from as ME is invisible - unless you are living with the person and see them crawling around their house as they're too weak to walk, and see them towel themselves dry and change the sheets every night for years from the night sweats, see them re read everything 20 times before it sinks in, then it is hard to imagine the bone exhaustion, because you look so fantastically well!!

I gave in to ME to get out of it: I learned not to fight it at all, and for 8 years I accepted that I was ill. I learned to pace myself, leaving 20% of what i knew I had in the tank, and going again another day. I changed my diet drastically also, and I took no risks at all.

It took years to get well, and I hope that I can encourage someone here to regain their health with the simple advice not to fight ME: just gently accept it and work with it to regain your health.

Good luck all!

[ReallyTired]

These threads annoy me. Ie. people think

mental illness = not real deserves no sympathy.
physical illness = real illness

The human body is not a robot. I believe that ALL illness is both mental and physical. Even cancer can be a mental illness as in that stress can increase the risk of cancer. www.telegraph.co.uk/health/healthnews/6981222/Stress-could-cause-cancer-claim-scientists.html

I am not sure what is the best way of safeguarding the mental welbeing of someone with a long term illness without insulting them. I believe that pychology has lot to offer the well as well as the ill. I think its essential to treat people with ME as individuals rather than to generalise.

[NorfolkNChance]

I always refer to mine as Energy Points (a bit like WW points)

I only have so many per day and so must budget with them.

For example work takes up the majority of my points for that day so DH steps up to amuse DD in the evening and do any wake ups in the night.

My days at home with DD are half my work points if we have an easy day but each walk/visit to friends/soft play adds them on. On my days home with DD I often go over and may need the weekend to recover. After all a two year old can't understand why Mummy is tired and or hurting all the time.

When I have a crash, I literally fall to the floor. My body stops me exerting any more pressure on it and I need over 20 hours of sleep plus other rest time to get back to a state when I can function again.

I am lucky in that my condition is considered mild so I can work PT and I can look after DD (with DH's help if things get too much) but I know others who are bed bound with their condition and their only contact is through their laptops etc.

For any of you out there on MN I have found this forum a great help although I am very much a lurker on there!

[garlicbutter]

the simple advice not to fight ME: just gently accept it and work with it to regain your health.

I believe you, pearshaped, and am still working on that! The OT team was helpful - they gave me a bit of a funny look when I said my objective was to gain "zen-like acceptance" but it turned out to be where they were headed anyway. Prioritising rest is more of a tricky challenge than it looks. What with only doing any one thing for 20 minutes, I'm buried under a pile of incomplete tasks which adds to stress, hrrmph.

Agree that it's any chronic/variable illness. If I tell people (eg ATOS examiners!) I need up to 16 hours sleep a day, they go "Oh, wouldn't we all like that?!" and I've lost count of the ex-friends who've quietly dropped their plans to come and visit because I don't travel to see them. Moan, moan ...

Feel free to request a thread move, if that's what people prefer :)

[OpinionatedMum]

What thread are you referring to? Does someone need a ?

Sorry to hear about the DLA.

People with invisible ILLNESSES are bearing the brunt of the disablist scrounger hating climate in this fecking country.

[SerialKipper]

"If I tell people (eg ATOS examiners!) I need up to 16 hours sleep a day, they go "Oh, wouldn't we all like that?!"

I've had that from my GP.

/imaginary rant/

Yes dear, you feel like that after working at least a 40 hr week in something intellectually and emotionally draining. Kudos to you and all, but I'm like this while doing nothing - barely even housework. Don't you think there might be something wrong?

And btw, you could fix your exhaustion by going part-time. Or giving it all up and becoming a market gardener. You could sit there, at your desk, and write a letter of resignation and then you wouldn't be so exhausted you can barely move or think. I can't solve mine that way. And don't tell me it would be hard to give up the career and identity you've worked so hard for - I'm wearing the fucking T-shirt.

/end rant/

Ahhh, that feels better!

[garlicbutter]

YYYY, SK !!!

OM, the other poster's thread did settle down somewhat and OP says it was helpful. It's going to be removed, I think, for fear of RL repercussions.

But RANTING IS GOOD

[OliviaMumsnet]

Hallo
We have moved this thread to General Health
Thanks
M towers

[garlicbutter]

Thank you!

[Wolfiefan]

I don't suffer any of the conditions listed in here. Life is hard enough when you are healthy and have kids. You are heroes and make me feel inadequate. I can not imagine what you go through each day. No one should judge until they've walked a mile in your shoes!

[garlicbutter]

Thanks, Wolfie :) A mile would be good ... hey, but my shoes last longer these days!

[LackaDAISYcal]

Thanks Wolfiefan

Can't speak for anyone else, but my condition kind of crept up on me, and has ben getting progressively worse over the last 15 years. The fatigue, which is the worst symptom ime, has only been problematic in the last year, until then I put it down to life with a raucous toddler/being pregnant/young baby/pregnant with young baby/two under two plus spirited 6yo etc etc.

I'm still learning my own limits, though I do know that being up this late is madness of the highest order, but DH has promised me a lie in tomorrow :o

[garlicbutter]

Oh, let's just lie on the floor DAISY. Thanks for the

It's the creeping up that does you in, I suspect. For years I bought into the idea that energy creates energy - the more tired I felt, the harder I worked in the gym and the further I ran. I got an incredible body and looked ever so healthy ... I put the exhaustion down to stress; the aches & pains down to a poorly lifted weight. Eventually a bunch of Life happened all at once, I had a tremendous breakdown and that was the end of me as I was.

But I think this would have happened anyway. Looking back, it was madness to combat tiredness by demanding even more of my system. But it's what we're told, isn't it? Health fitness. Not really. I should have done less toning up and more lying down!

Having young children is fantastically exhausting. No way round it. As you've coped thus far, you must be made of strong stuff. I'm glad your H takes care of you - enjoy the long sleep!

[Hebiegebies]

Wolfiefan, thank you for your comment, if you prefer you could whizz a mile in the mobility scooter, once you get used to the stares it's actually quite fun

[garlicbutter]

Wow! Have you got one, Hebie? Embarrassing confession - while I'm ever so glad I don't need a scooter, I've always wanted one. Even when I was healthy! Suspect the stares might be Like the way people stare at Ferraris ... "It's a bit strange, and not for me right now, but I bet it's fun to drive"!

Are they hard to get in and out of?

[garlicbutter]

Leonie. No wonder you're depressed. Are normal antidepressants incompatible with your other meds?

I hope you're very good at saying No.

Is there no way at all to organise a lift to school?? I couldn't do that without kids, and I don't have your pain issues.

[Hebiegebies]

Try shop mobility for scooters, they loan them out for free or a yearly subscription of about £10 or similar

I can walk but I find standing about making decisions waring. I use mobility scooters to buy clothes, go out with family and shop on line for food

The best bit is that at the start of the summer I used them all the time, in the airport, at Center Parcs, etc, now I only need them occasionally!

[garlicbutter]

That's great, Hebie :) Also the news that I might be able to hire one! Whoo-hoo!!

[nannipigg]

I have an undiagnosed illness for over 3 years now. Mainly allergic reactions to most normal foods and cleaning stuff. I suffer almost daily with it. Hives, swellings....then comes the fatigue, low mood and aches and pains.
The Docs gave me vit D, which has helped. They have now put me on a special diet too....Low Salicylate Diet, which cuts out loads of fruit and veg....which I love :-(, the hives and swellings have improved, but the fatigue seems to come and go along with the pains and the insomnia. They are still not able to give me any kind of diagnosis and it really worries me sometimes especially when I am having a bad day or reaction, what is actually wrong with me.....